Mac Musings

The Internet Is Social

Patrick Griffin - 2000.02.12

I am most grateful to Patrick Griffin for sending me the following letter in response to The Social Internet. It validates a lot of my thoughts about the study and points to the power of the internet in health research and community creation.

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Hello Dan,

I read with much interest your review of Stanford's "research," The Social Internet. I am a graduate student in Adult Education, with an emphasis on Web based training, and particularly on user-centered site design. I am also disabled, and the author of the Kennedy Disease (KD) Web site, found at <http://www.geocities.com/~kd-sbma/>. (Update: Now at http://www.kennedysdisease.org/)

Kennedy's Disease (KD), named after the neurologist who identified it as a separate disorder with a genetic origin, is also termed spinal and bulbar muscular atrophy (SBMA). It is an X-linked inherited neuromuscular disease that afflicts men, usually when they are 30 to 50 years old. It is similar to Lou Gehrig's Disease (or ALS) in symptoms, but it is more slowly progressive. It is definitively diagnosed by the use of DNA analysis to determine the length of a particular trinucleotide repeats in the androgen receptor gene. It is not entirely understood, has no specific treatment, and has no cure.

I have studied research methodology and its applicability using email and Web sampling. Your comments about the sample selection apparent in this study were on target. Making generalizations about a population based on a non-random sample (therefore non-representative of the population) is a significant flaw in any research. It appears that this study made that error; thus its findings are suspect at best.

I have also studied community development, also from a Web perspective. I found it interesting that the study ignored the use of the Internet as a means to find health or medical information. In my experience, that is a major use, especially for those afflicted with chronic health problems or rare diseases for which there is no cure, such as ALS or KD. I found the following comments astute:

What's interesting is that the top use of the Internet, email, is most definitely a form of social interaction, as are using the phone, regular mail, or meeting in physical space. In fact, I've found email a great way to create new communities of people with similar interests regardless of physical proximity. Rather than isolating me, email has made me part of several communities, allowing me to interact with thousands of Internet users around the world on a regular basis. Yet the study states the Internet isolates users.

From my standpoint, which is supported by other research, Web access, and particularly email, increasingly promotes social interaction in certain segments of society. In my case, those with rare diseases can share experiences with others throughout the country, and the world. KD is extremely rare, and without the Internet I would probably never have met another so afflicted. The Internet has allowed the formation of a virtual KD community and has certainly made me feel less isolated.

For those with physical disabilities, mobility is often a serious challenge. Again, the Internet allows one to travel without leaving home, and able to see, learn, and communicate in ways available only to those who are able-bodied. Finally, older persons are increasingly becoming a Web presence. The frail elderly gain in ways similar to those who are physically disabled. Others use email to communicate with dispersed friends and family members, thus maintaining both strong social ties and a feeling of belonging.

I support research on the use of the Internet. However, the research must be put to the same scrutiny and peer review of any other research, before it is publicized. As Americans are increasingly attuned to "sound-bite reporting," the terms "shown by research" can give the mistaken appearance of validity and sway otherwise reasonable people to make errant conclusions. Institutions of higher learning must develop and enforce proper research methodologies for using Internet based data.

Further Reading

• Does the Internet Make Us Lonely?, Jakob Nielsen's Alertbox, Useit.com, 2/20/2000. "Why is the telephone considered a superior form of social contact relative to the Internet...?"